Home

After a year and half battle with cancer, my sweet Paw- paw has gone Home.

The last few weeks have been very hard, as he has been in an intense amount of pain and he has been ready to go. Every night he'd say he hoped the Lord would take him home, and on Wednesday night he finally went home, surrounded by his wife, sister, and children.

We are so blessed to have had this time to prepare for this, to have all had the chance to say goodbye ,and for him to come to a place of peace before he died.

I have been incredibly blessed to have 29 years with all 4 of my grandparents. Their impact in my life has been invaluable. I have nothing but extremely fond memories of my Paw-paw...collecting pecans, pears, and magnolia seeds in the backyard, long walks on the pier at springmaid beach, games of Putt-putt, coin collecting, 2 dollar bills, a contagious smile, a bit of a bark but absolutely no bite, an unending love and faithfulness in marriage, and a genuine love and concern for ALL people.

I love you Paw-Paw -it's been an honor- you will be missed by all.

Just Like Daddy...

Sleep Study ** updated**

** Update**

Well, we survived the sleep study. All in all it went fine. He didn't like having all those wired put on but he handled it pretty well, all things considered. Finally by about 9:30 they were done getting him ready and so 2.5 hours past his bed time, we tried to sleep. He didn't want me to leave his sight - he would cry when I tried to go into the bathroom to change my clothes and get out of his sight, thinking he would fall asleep better that way. Every time I would go in there he would start screaming, so I threw on my jammies and threw washing my face, brushing my teeth, etc. out the window... laid down on the bed next to his crib and stuck my hand through the crib rails for him to hold. He fell asleep right away once I did that but if I moved even the slightest bit his eyes would fly open. After about 15 minutes I was able to move my hand and try to sleep as well.

So technically he was asleep by 10pm. He woke up about 3 times on his own, frustrated about the wires and would thrash around and cry but then go right back to sleep. If it had just stopped there it would have been fine but the nasal cannula in his nose that measured carbon dioxide levels( the part the doc was most interested in, of course) kept coming out and so literally about every hour the nurse( or rather, respiratory therapist) had to come in to fix it. She said that most babies don't wake when she just has to fix that, but Cohen is not like most babies. Before she hardly would touch him, he was awake, screaming and rolling away from her in the crib. I had to roll towels up and put them around the crib because he kept hitting his head on the metal crib rails because he would roll away with such speed and force. He would, at least, go back to sleep pretty quickly...only to be woken again about 45 minutes later.

I felt bad for him and the nurse. He just wanted to sleep and she just had to do her job. One of those necessary evils, I guess.

In the morning, Cohen was NOT happy to be woken again and cried horribly while getting all the wires off. Seriously, every time the nurse would talk he would scream at the top of his lungs, even after we were all done and changed and in the hallway saying goodbye. The other nurse( who was monitoring a def. child) could talk to him and he would smile but as soon as our nurse talked, he'd start up again. I guess he holds grudges!!

We made it through and both took a 2 hour morning nap!!!

I didn't end up taking any pictures of him with his wires on - there was never an appropriate moment for that - but I did snap one of a very unrested, goopy haired, wire free Cohen in the morning...


*original post*


We meet to get the results Oct. 8 but the nurse said off the record that things looked pretty good.

Once again, I'm falling so behind on blog updates. I was on a roll there for a while...I'll catch up again soon but wanted to let everyone know that Cohen is having a sleep study tonight. It wasn't going to be until Oct. but they had a cancellation so we're going in tonight. The timing, while a little rushed, is good because this way we'll have his results back before we see the neurologist too.

We had our first appt. with " the sleep doctor" last week and we LOVED him. He has been the most knowledgeable( aside from our geneticist) doctor about dwarfism we have seen so far. He explained everything so well and was interested in the things I felt like he should be.( did that make sense?) He was very interested in his chest size...something I haven't figured out why other doctors don't seem to be since that is the very thing that made the doctors think he could never live and the very thing that makes his future uncertain now.

He is not super concerned about apnea with Cohen because his structure looked so good but he does want to check for it still and was interested in his input and output of oxygen and Carbon dioxide.

He doesn't exhibit a lot of systems of apnea but does have some restless sleep and also sleeps more than an 18 month old "should" in a 24 hour period.

I'll take Cohen in to the hospital tonight and Chris will stay with Cort. Hopefully Cohen will actually sleep!!!!

Cocoon

A few weeks ago, my friend Kelley was over with her two kids and we made an impromptu craft, complete with a science lesson!!

All four kiddos had fun and they turned out pretty cute:




And here's Cort in his own cocoon at my mom's house...

Maybe we're an easy audience...

...but we sure think Cort is pretty funny. Here's the latest installment of Cortisms...

A month or so ago(forgot to record this one last time), we were driving down the road and passed a church. Our conversation went like this..

Cort: ( very excitedly) Mommy, there's a cross!!!!

Me: You're right, that was a cross.

Cort: The cross was RIGHT THERE!!

Me: Yes, that was a church and there was a cross outside.

Cort: ( quietly, almost under his breath, but in total amazement) Jesus died right there!!!

He literally thought that was THE cross, not just a cross.


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With Chris' sister in Athens:

Jessica: Cort, what do you learn about in church?

Cort: ( in a very nonchalant voice) Uh, I don't know, Jesus, or God, or something. ( shrugs shoulders)

We'll have to work on that holding a little more importance!!

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On another Sunday:

Me: Cort what did you learn in church today?

Cort: That God is a turtle.

Me: A turtle?

Cort: No, a turtle.

Me? I'm a total loss. God is a turtle? So I think quickly about what they were suppose to be learning about it and...

Me: Oh, God is eternal?

Cort: Right, God is "aturtle".

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The other night when Cort was about to go to bed:

Chris: I like your new jammies, Cort.

Cort: Maybe you can wear them tomorrow when they get a little bigger.

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The other night during his "call for us a million times routine" at bed...

Me: (walking into his room) "Cort, stop calling, you need to go to sleep."

Cort: I can't go to sleep because I don't eat breakfast very well"

Oh, that explains it. Where do they come up with this stuff?

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A few phrases he's stuck on...

"each to each to each" ( this is what he says to say he wants to go one by one, or to say he wants to put things side by side)

"eaver bigger" - Even bigger

" Is that wierd?" He's sort of stuck on the word weird - he sort of uses it like the word silly

"I'm getting busy(bizzy)" He means dizzy, but it's pretty darn cute!!

When ever he's remembering something from the past he always says it happen "last night" even if it was a year ago.


Ok..that's all I've got. I'm sure I'll think of a million more as soon as I post this. I just love to get these recorded because I know I'll so easily forget these cute little things.